Nearly 20 years ago, a teenage girl with type 1 diabetes read an article in a well-established diabetes publication about “diabulimia.” More specifically, she read the sidebar of the article that essentially taught her how to skip her insulin injections for the sake of weight loss. Despite reading the sentence explaining just how severely dangerous this behavior was, the girl absorbed only the part about losing weight. Already teetering on the edge of an eating disorder, learning about insulin omission was all she needed to dive headfirst into what became a 10-year battle for her life.
Today, Asha Brown, 31 years old and the founder of WeAreDiabetes.org (WAD), says that choosing her words very carefully is one of the most important things she does in her work of education and supporting others in their battle and recovery with ED-DMT1 (eating disorder with diabetes mellitus type 1).
“If I hadn’t read that article as a teenager,” explains Asha who was diagnosed with type 1 at age 5, “it would’ve never occurred to me to skip my insulin for weight loss. And more specifically, I wouldn’t have known how to do it.”
Contrary to common assumptions, an eating disorder in anyone whether or not they have diabetes, doesn’t usually begin with blatant anorexic or bulimic behavior. Instead, Asha explains that it’s very common for someone with an eating disorder to begin their battle with seemingly harmless behaviors that our culture commonly promotes for “healthy” weight loss, such as cutting calories, exercising more, always taking the stairs versus the elevator, or avoiding a certain type of food group or macronutrient like carbohydrates or dietary fat.
The NEDA (National Eating Disorder Association) explains that for some—particularly those at a higher risk of developing an eating disorder or already engaging in eating disorder behaviors—will often take these suggestions too far. Seeing the positive results from their new “healthy” habits can lead a person to taking that new habit to a severe extreme, making it remarkably unhealthy and even dangerous.
“Those at a higher risk will restrict even more calories, spend even more time at the gym, and eventually find themselves in an all-consuming obsession,” explains Asha. “It’s also common for individuals who start their eating disorder journey with restricting calories to suddenly shift to binge-eating. As though a switch has suddenly been flipped, those restrictive behaviors devolve into compulsive overeating (due in part to the hunger from hardly eating anything). And that cycle of restriction and overeating can sometimes be paired with purging, such as self-induced vomiting or laxative abuse.”
For a person with type 1 diabetes, the next step is diabulimia.
Asha emphasizes that discussions and education on ED-DMT1 are crucial and necessary, but the way that discussion is shaped can make the difference between bringing awareness and actually teaching someone how to engage in this life-threatening behavior that, at the very least, leaves most of its victims with severe complications, even after just a few months of skipping insulin.
“Sure, I knew it was bad,” Asha recalls as she thinks back to the start of her own battle. “But what I read in that article kept floating around in my head. I was tired of the restrictive diet. My brother had a bag full of Halloween candy. And I wanted some. It was the perfect storm.”
These are important guidelines Asha follows when talking about dealing with eating disorders and diabetes:
“I never talk about the specific behaviors that I did to lose weight, about the routine of when I did or didn’t take my insulin. I don’t talk about what I ate, how much, or when. I don’t talk about specific foods, because someone who may already been teetering on the edge of an eating disorder can read about those binge-worthy foods and feel triggered to begin their own dangerous battle. If they read a list of all the things I ate, I would be essentially giving them a how-to of what to do for their own diabulimia.”
Instead, Asha might explain the exhaustion she would feel during the day, her desperate efforts to avoid eating despite her intrinsic hunger, and the simple fact that she eventually binged after starving herself for a period of time. The next day, the guilt of binge-eating led to more restriction which would lead to the next binge. A vicious cycle, but one that can be talked about without potentially harmful “how-to” specifics.
“I never use numbers. I don’t talk about how high my blood sugars were because this is another ‘how-to’ for someone listening or reading who will do anything to lose weight,” warns Asha. “If you’re speaking to an audience of people who are struggling you don’t want to give them something to compare to or aim for.”
“I never talk about pounds of weight lost or clothing sizes. I never show images of what I looked like during different stages of my eating disorder. It’s way too easy for readers who are struggling to see a picture and contort it into something to aim for—a dangerous goal. The only time I’ve shared images with is when I’m speaking directly to a group of practitioners and medical professionals. For the general public it’s way too easy for someone to get excited about the differences they see.”
Honesty about the risk of complications:
A common misconception is that a person might engage in diabulimia behavior for just a few months, achieve their weight-loss goals, and get out “scot-free” because they were omitting insulin for a short period of time. Asha knows all too well that there is no safe period of time a person can engage in diabulimia without causing real diabetes complications in your eyes, kidneys, stomach, and more.
“You can’t think that just because you made it out alive means you’re unharmed,” explains Asha. “The scary thing is that it’s all about your body and your genetics—I know people who struggled with diabulimia behavior for 1 or 2 years and are now required to use colostomy bags. Or those who say, ‘I only did this for two years, why are my eyes damaged?’ That’s not how diabulimia works. I struggled for nearly a decade—and I do have a few permanent diabetes complications.”
“The reason I believe people can continue to omit their insulin for months and years without seeing those complications right away is because the complications haven’t revealed themselves yet.”
Asha explains that studies show there is a potential 3-fold increased risk of developing complications more quickly and with more severity in the ED-DMT1 population.
“It’s a gamble: if you are going to purposefully skip your insulin, you’re stepping into this territory where your chance of complications is tripled. But the studies don’t go into specifics of how long those complications take to develop, it varies greatly from person to person.”
Talk about recovery, too:
“I know people who have died from this. They are dead because of ED-DMT1,” explains Asha. “It is very serious, but it’s important to not leave the reader with the message that they are simply ‘doomed’ if they behave in this way. You don’t want to portray that it’s somehow hopeless if they’re already engaging in this behavior because it can diminish any sense of hope in their efforts to recover.”
Yes, if a person engages in this behavior for merely 3 months, they can cause long-term diagnosable diabetes complications, but that doesn’t mean their life isn’t worth recovering for. Talking about the benefits of recovery and grabbing hold of your life again is just as important as talking about the complications.
Diabulimia isn’t just for females:
“It affects all ages, not just young women. What’s interesting is that the media still portrays this as a problem for young women. Maybe women are more willing to be interviewed and share their stories, but there are a lotof males with type 1 diabetes battling ED-DMT1, but it’s often misdiagnosed as being non-compliant and apathetic.”
Asha explains that in her experience, males struggling with diabulimia also have a much harder time talking about their eating disorder. It’s an intense vulnerability and they struggle in a different way when it comes to communicating and asking for help.
“We need to keep talking about this,” emphasizes Asha. “We need to dig deeper into this issue and keep the conversation going so we can ensure that this unique population gets the help they need.”
At WAD, Asha and her team strive to support individuals and their families despite the odds being stacked against them because of obstacles such as a lack of insurance coverage, lack of expertise in treatment centers, lack of family/spousal support, complications associated with prolonged elevated blood sugar levels, and more.
“I’ve watch the majority of our clients fight their eating disorder and win. It is absolutely possible to recover from this, and it is absolutely possible to live a full and brilliant life. The team at WAD and our clients are proof of that.”
Despite that ED-DMT1 has been recognized as a diagnosable condition since the mid-eighties, the barriers that still exist communication and general education remain in both the healthcare system and the media. While WAD is in the process of developing programs to better educate clinicians and better serve those struggling with ED-DMT1, Asha says there’s plenty that the diabetes media can do, too.
“Instead of writing stories that actually sensationalize this form of an eating disorder,” she explains, “I’d love to see diabetes media gain a better understanding of how ED-DMT1 really takes shape and what is and isn’t helpful to those struggling.”